Pain Patients Need a Champion

By Pat Akerberg, Columnist

As the national debate shines a spotlight on the opiate addiction and overdose problem, the divide widens between how the CDC/FDA/DEA and chronic pain sufferers see it. 

Is it an opiate problem alone that can be regulated or a pain management problem that needs to be addressed? The government and pain patients are both fighting to preserve life, but their vantage points on the risks and benefits of opioids are very different. 

As protectionists, our Goliath-like government agencies are reacting to tragic deaths caused by opioid overdoses with a "War on Drugs" approach. They have mobilized around a clear direction, ownership, and action plan – stringent prescribing guidelines that force physicians and pharmacists to curtail and deter patient access to these medications. 

But for millions of chronic pain sufferers, protective of their own survival, those guidelines now put them at risk of their pain being undertreated or untreated.  

Already marginalized by chronic pain, they can’t afford to lose more quality of life or the will to press on if the benefits of those medications are abruptly taken away. The human right of self-preservation and the oath to do no harm are at issue.  

Even though pain sufferers are unified in their opposition to many of these measures, without a clear direction or representation they haven't had any influence. Their input has been largely excluded by the government’s closed process, a top-down stance many view as misguided and cruel. 

With sporadic grassroots efforts, pain patients are pushing back -- sporadic because many are already overwhelmed trying to cope with their medical challenges.

When people who are affected by a blanket change push back, it’s because something was sorely missed by the change drivers.  The guidelines weren't communicated well, didn’t include input from the people affected, and minimized issues that could have many serious unintended consequences. Many in the pain community feel betrayed and abandoned.

While the David-like courage and bravery of patients moves me, I’m also one of many frustrated chronic pain sufferers concerned about making headway without a proactive approach. 

Maybe it’s time we borrow from the best change management practices used successfully in business.  These practices effectively mobilize the energies of those needed to make change happen.  Progress occurs only when several key factors are fully defined to get from “current reality” to “future state." Those critical factors involve:

  1. A clear definition of our unmet pain management needs
  2. A realistic assessment of our current pain management reality
  3. A compelling vision for future pain care  
  4. A transition plan to get there

When any one of these critical success factors falls short, no amount of reactionary rhetoric or emotional expressions from us will substitute for our own proactive pain management platform.  Our efforts to fight back will sputter up against a bureaucratic wall. 

The deficiencies in the change approach our regulators took frustrated our expectations that we’d be heard and understood, with empathy and dignity.

Expectations can backfire if they’re unrealistic.  When they operate unchecked, it means that we have assumptions, predictions, and underlying beliefs that something will happen or play out the way we hope and need them to. We’re attached to an outcome when we hold onto those expectations. 

But life isn’t perfect and systemic change doesn’t happen overnight.  Eventually we are bound to have an experience like this one in which the gap between our expectations and reality results in a disappointing thud.  A self-help quote describes that occurrence well: “expectations are the partner of disappointment.”

Trying to change their hearts and minds about us, we’ve worked to convince the regulatory, profit-seeking, and career promoting stakeholders that we’re credible and responsible, not addicts or malingerers.

But the more dramatic our attempts have been, the more we’re viewed skeptically. Taking that personally, we feel misunderstood, thrown to the wolves and without impact.  In self-defense, sufferers continue to dial up reactionary and passionate protests, hoping regulators will someday see that their guidelines don’t solve our pain management needs.  

Since hope alone isn’t a strategy, we should redirect our energies and stop giving our power away while emotionally bargaining over the legitimacy of our pain management concerns. We also need to stop seeking compassionate understanding and consideration from entities ill equipped and unlikely to offer them. 

The “recovery” community sums up that advice as, “you don’t go to a hardware store expecting to buy bread.”  Better to save our hopes for our families, friends, and support groups where the odds favor us. 

Likewise, in the context of systemic change regarding chronic pain management, our expectations have a better shot of being met by a credible coalition that represents us.  

First and foremost, a strong change initiative needs a champion who owns the challenge and drives a clear and comprehensive change management platform that sets the conditions for success.  Without that credible representation, we have no seat at the table, nor any accountability.

Our very real pain management needs present a clear role for advocacy groups to step up and represent.  There’s no shortage of would-be sponsors for us to recruit.  Pain Pathways estimates there are 21 pain advocacy groups, along with 39 other disease related advocacy groups. 

The arrow of purposeful action and accountability points to an urgent unmet need – a coalition willing to champion a change agenda that best represents our interests, including ways we can champion and support it. 

The regulatory agencies have their plan with solid representation.  Let’s face it, without our own platform we sit in pain, frustratingly sidelined.

Let’s regroup and start shopping elsewhere for bread.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.